Hi Key Lyme,
Welcome to our community! First of all< I'm so sorry that you have found yourself in the midst of all of this with tick-borne infections. It's not an easy road to be on, if for no other reason than all the controversy. I'm hoping I can help shed some light on this though. Just so that you know, I did not use a LLMD to heal, but I do defend the right for them to treat these infections and for people to be treated by them.
This link will help explain the whole story:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/ These next two explain how the Infectious Disease Society came to their conclusions about
the treatments for Lyme Disease:
www.ncbi.nlm.nih.gov/pubmed/20946067archinte.jamanetwork.com/article.aspx?articleid=226373The reason why LLMD's are being persecuted is because they are on the leading edge and are controversial - like most of the researchers and doctors who choose to work "outside the box" to find treatments that actually work - think of the HIV/AIDS movement and their struggle to get recognition not only for their disease, but for treatments that work. It's the same issues, just a different disease.
If you do the research, it won't take long to see that the 'standard' IDSA treatment for Lyme disease leaves almost everyone that goes through it with most of their symptoms, or those symptoms return after a period of time. They are told they have PLDS - Post Lyme Disease Syndrome - but here's the kicker - they still have evidence of infection with symptoms and the bacteria can still be found in their blood when looked at under a dark field microscope!!
There is no other infection that they do this with, and even Dermatologist are writing prescript
ions for the same abx - Doxycycline - and in the same amounts - 400 mgs - 600 mgs per day - for
acne! Now I feel sorry for those that have acne that bad, but it's still not
life threatening. Yet, when the doctors who have been trained by ILADS (International Lyme and Associated Diseases Society) wish to treat a potentially life threatening, and most definitely a debilitating infection of Lyme disease - they are called quacks and are persecuted, brought up on "charges", can loose their license and their practice......because they chose to follow what is sound, scientifically backed treatment protocols.
Something that makes Lyme most unique is that what works for one won't work for another. So we wind up with many patients that try many treatments before finding one that works. I'm an example of that because I'm an "abx failure", but I am completely symptom free and have been for the last 15 months after
massive amounts of stress after treatments ended - my FIL lived here for a while until his passing and my husband and I cared for him by ourselves.
I know it all seems
very "cloak and dagger", but there are good reasons why we keep our list of doctors 'close to our chest' and why we all need something different.
With that being said though - there are more and more doctors out there that are using the term LLMD - that don't act like they have had any of the ILADS training and that makes them dangerous. We are incredibly ill and they wish to make some money off of us is all.
The absolute best way to find a good doctor to treat you is to ask on a forum or in a "face-to-face" support group - we are the ones in the trenches trying to make a difference and the ones who are seeing these docs. If you get 2,3 or even better 4 people saying good things about
a LLMD, then it's one that you can try with some confidence. Some people do have to switch doctors because they have a difficult case and need a new perspective, or they choose to heal naturally, or a number of other reasons.